Posted by: jeanne | July 26, 2008

my mra

things are a little confusing right now. i’m having rather a lot of tests done.

ever since march i’ve had this fatigue, and unusual bowel habits ranging in consistency from sponge to clotted cream. so i’m having it investigated.

normally you’d say that ‘your doctors’ are having things investigated, but in this case, my medical care is entirely self directed.

because of the little voice – sometime i’ll write about the little inner voice – i’ve had to learn all there is available about my medical condition so that i won’t be fed thru the machine like in some bad science fiction movie.

when a lump has been found, it was me who found it and took it in to a doctor asking what is it.

it may look like the doctor is in charge of this case, but it’s really me. i’m initiating the spending of loads of money and effort to run tests to see what is it.

so at this point, i’m having my diarrhea investigated by a gastroenterologist. the test results still aren’t back yet. i’m having the rest of my gut and indeed my whole abdomen and pelvis cat scanned to see what is it. those results aren’t in either.

i’m also investigating the possibility of having an aortic aneurism inherited from my dad and beginning to plague the siblings. which means an mra.

i went to the cardiologist in early may, and he ordered a sonogram and a cat scan. the insurance balked at the cat scan, and the sonogram was inconclusive, as it would be, since it kind of doesn’t see the part of the aorta i’m interested in.

when i came back for my follow up there was nothing to follow up because the cat scan didn’t get done and a few things fell between the cracks.

i’m beginning to think lots of things fall thru the cracks in that office, but okay, i don’t imagine i’ll be seeing a cardiologist the rest of my life like i will an oncologist.

but wouldn’t it be funny if i died of heart trouble instead of cancer? wouldn’t it be funny if i got hit by a bus?

why wouldn’t it be funny?

i think it’s funny.

anyway, because of cracks at the cardiologist’s, the doctor decided that there was enough abnormality in the sonogram to warrant some diagnosis that the insurance company was bound to accept, and, satisfied, the doctor left it to the nurse to get me scheduled.

i left the office still waiting. all sorts of places don’t take my insurance, and the poor nurse has to call around until she finds a place. she said she’d call me.

so she never did, and it’s been since june.

so i called yesterday wanting to see what progress if any had been made scheduling me. and the nurse was on vacation and the other nurse pulled up my records and couldn’t find anything about any mra scheduled to be done, no doctor notes, nothing.

okay. so then an hour later the clinic called and said this was a courtesy call to remind me that i had an mra tomorrow.

so that’s when it was. and i had no idea, and it had probably been schedled for a month, with both the scheduler and the doctor’s nurse thinking the other had contacted me.

or something more sinister.

so, today, in just a few minutes, i’m going to take a final dog walk, paste together a sandwich, and grab my book and go off to sit in a plush modern waiting room with the tv on (unless i’m the only one there. i get right up and shut the damned thing off with no permission from anyone).

i’m sure an mra has no effects other than a massive dose of radiation, and this is only the second time in a month that i’ve done that, so maybe i’ll see more hairs in my brush soon. (and i looked it up. an mri is a big dose of a heavy duty magnetic field, but that technology is too new to have risks and dosages quantified.

or something more sinister.

back soon.

well, i’m back.

the hospital i went to, a very famous atlanta hospital, was looking a bit ancient. brand new parking deck, but the concrete was already peeling and dusting off. the elevator smelled like new york city – body smells and axle grease, it was impossible to find a parking place, and once i was in the building i became immediately and hopelessly lost.

what happened to the painted stripes that used to run along hospital corridors? yellow for radiology. green for labor and delivery. they don’t seem to use them anymore. it was a great system, and i had a hard time getting lost.

not in this hospital. tunnels, corridors, branching corridors, double doors, waiting rooms, elevators, vending cubbies. sickly yellow, shiny walls and floors, acoustical tiled ceilings. everything echoed, everything glared.

they musn’t have been busy for a tuesday, because they whisked me right into the back, after my filling out 2 pages of interesting questions about what kind of implants i had in my body.

the list was very long and in very small type, and i was expected perhaps to go and tick each and every one of them ‘no’, or else assumed to just draw a line thru the no column like a sane person with a schedule to keep.

metal rods in arms and legs

pacemarker

implanted bone induction device

stray clips and surgical tools

there wasn’t an other category or i would have put alien probe.

the nurse was named latoya. i told her i would be writing this up. she said i should mentione her. she’s got 2 kids and so can’t quit the rat race right now, but she knew where i was cming from.

when i’m out in public i spend my time prosyletizing. i’m not a christian. far from it. but i do accost perfect strangers on the street, violently exhorting them to quit their day jobs. their employers are evil bloodsucking corporate aliens. the only way to fight back is by dropping out.

when i have the energy.

i showed latoya my now greenish bruise when she announced she would be interting my iv today. she tut-tutted about the nurse who did me wrong. she must have been bored that day, she supposed. happens.

our girl today was quick, commanding, and competent. she was also jolly, and we talked all the way thru the corridors to imaging. which was unfortunate, because i couldn’t for the life of me remember the way back.

i asked her how much radiation i was going to receive today, and she waved the question off. it’s no more than sitting in the sun.

but i’d just looked up the figures for alll the tests, so i said nonononononono a cat scan is equivalent to 500 chest xrays, what’s an mra worth? and she looked bothered. i mentioned the scandal of a few months back, she looked vaguely mindful. i said nagasaki and hiroshima and she looked blank.

well, she finally responded, they don’t make us wear radiation badges, so you’re not even getting as much as sitting in the sun. i shook my head. i told her all she had to do was google it.

we went down a whole bunch of corridors. i asked if she got a lot of exercise in these halls, and she says she often walks over to building A thru the tunnels. takes about 15 minutes. she greeted everyone as they passed, all the hospital employees. they all flirted with her, and she had a snappy answer back. i felt privileged to be with someone so in the know.

the girls in the imaging room weren’t quite as chummy. you’re getting it where? in the chest. okay, you don’t need to take your shirt off. you’re not wearing a bra? hell no. okay get up on this (way familiar) bed. shouldn’t i take my metal objects out of my pocketses? oh sure give them here. time for one more joke they didn’t get, and they had me on my back and were strapping me down.

it wasn’t exactly good cop bad cop, it was more like cop and cop’s boss. when one lowered the bed so i could scramble on and hang my feet over the wedge bolster, the other was deftly hiding the obvious torture harness, which i caught a glimpse of, swinging as the bed was lowered. the one settled me down and told me to scootch forward, while the other one slapped the torture device over my chest. are you going to strap me in? nobody ever leaves…alive.

they didn’t strap me in, but they wrapped my arm, the arm with the pounding, aching iv line in what felt like rigid carbboard so that it wouldn’t move as i was squeezed into the donut. i didn’t want it to move, because moving would involve edging the needle catheter out of my arm bit by painful bit. i was grateful that they splinted up my arm. i wasn’t so happy with the harness. it was a large, padded, gray openwork device that looked like football pads. the one lay it over my chest and did stuff i couldn’t see, denying the while she was strapping me in.

one of the questions on the form i had to fill out when i came in was, ‘do you suffer from claustrophobia.’

i was facing a donut, just like the donut i got my cat scan taken in. it was huge, the only thing in the room besides rolly carts and trashcans. it was grayish white, it was menacing without moving. it didn’t hum or glow or whirl, it just stood there in the low-lighted room with – was that soft jazz playing on the little boombox on the floor in the corner?

there was the same old robotic looking hookup for the iv. i asked what the contrast was going to be today. they said something, several times, that i couldn’t for the life of me figure out how to spell, and so couldn’t remember for more than 3 seconds afterwards. the nurse said to google mri gad, as in gadfly. here’s what i found out about the contrast.

they connected me and strapped me down, and told me they’d be in the next room watching over me (shielded from the radiation i was getting). they put earphones on me and gave me a rubber ball attached to an air line that i could use to call them with if anything happened i didn’t like. well, if anything bad happened. if anything of an emergency nature happened.

then the one spoke thru the earphones, and i answered, and all that was okay. then the machine moved me into the donut, and i discovered that it wasn’t just a donut, it was a very long, or thick, donut, which is i guess is some sort of mathematical shape, not just ‘toroid”

it was a very tight fit. i kept my eyes closed, because when i opened them i was staring at white plastic four inches from my nose, with a little opaque panel at the top of the inside of the tube. it felt very close, even tho there was an air stream around me.

i kept my eyes closed because subjecting myself to these ordeals, as prosaic and mild as they appear to be, takes a lot out of me.

getting my vein punctutred and walking around with the bruises of that stresses me out. walking endless corridors and striking up conversations with strangers takes a lot out of me. negotiating the fearsome parking decks freaks me right out. getting toxic waste pumped thru my veins makes me feel like my head is in a jar and my body is wanderig loose along buford highway.

i come home from one of these things and i have to take a nap and am worthless tomorrow. that’s why i only schedule one of these damn things a week, max.

the other one said we’ll be right here, thru my earphones, and they abandoned me and slammed shut what sounded like a freezer locker behind them, with seals and real weight in the door. safely isolated from all the xrays streaming around the room, stopped only by my body, my phone, keys and book in the corner, and the disposable trash.

the machine moved me into the center, the fucking thing began making noises all around me. all sorts of noises. i’ve never been so entertained. let me see if i can remember them all.

there was a calibration kind of noise, which was a bunch of various tones from company whistle to a fast-busy signal. then the one told me thold my breath, and the real noise began. a chunka-chunka noise, faster than my heartbeat, which i could tell by the pressure on the panic bulb in my hand was considerably elevated.

the chunka-chunka was a two step. there was a tone, somewhere in mid-alto range. a beeping noise, like of like a zylophone except not resonant. in the middle the thing went chunka and the bed shuddered.

there was another noise. this one was like a truck backing up, a different pitch, but still a beep. still about as fast as a heartbeat. i counted 29 of them. this was while i was holding my breath.

but nothere were other noises between the holding breath times, and these sounded like a band saw, an alarm clock, a fire alarm. very rhythmic. very loud. the earmuffs weren’t enough after they put the dye into my veins and took their real shots. it was a rising tone that got louder the longer and higher it went. this was also a hold my breath, and the difference was that the contrast was in my veins.

this’ll feel cold, the one said as she told me they were going to inject it now.

but i’d been feeling red in my chest, hot, warm, as if the harness i was wearing was heating up under the bombardment of the xrays. like a plate in a microwave oven. i thought it was the dye in my veins. but no, it was the coil inside the harness heating up. i just said oh when one told me this, when i could have asked why it heated up.

not always, but mostly my chest heated in the middle of some noise or other. i know there was a pattern, but i couldn’t tell, there were so many different noises. i was pretty dazed.

you really are helpless in the hands of the medical establishment.

once they injected the contrast, i could feel cold. not cold to where you’d draw your hand away, but nonetheless ice in my veins. it felt cold, i could feel it going up my arm, and i felt it hit my armpit and then i didn’t feel cold anymore, but i felt it moving thru my chest. my organs, my intestines i guess or my ovary felt strange, like it had a headache.

then i had to hold my breath again and bear the really unbearable noise. twice.

and finally they pulled me out and shooed me off, and again i was lost the moment i stepped out of the door. i’d managed to ask how many scans they did of me and she counted thru her procedure and came up with nine. that’s nine times how many chest xrays?

i deliberately took the longest, most convoluted way i could find, taking the worst choice at every branch, and got back to where i came in just in time to run into someone who looked very familiar, heading toward the same bathroom door.

it was carol, whom i know well enough i said i was in for an mri and she was in for something, but needed to tell me that she was now doing whatever i did, which is how she introduced her breast cancer.

people don’t know how to talk about it.

i don’t have the patience for that.

i immediately asked how big it was, and what they were doing about it, and she said that she was doing what they told her, and thank god it didn’t include chemo. she was doing radiation, followed by hormonal treatment, but not tamoxifen that i’m on but one of the other ones, arimedex or something.

i told her i didn’t do radiation or chemo, that i was involved in listening to the little inner voice, and that i found it necessary to know as much about it as i could learn, because doctors don’t know what they’re doing. she looked sheepish.

i asked about her surgery, she pointed to the side of her breast and talked about a divot. my divot, when i still had a breast, was alarming enough to some of the two-minute boyfriends i had at the time, but i eventually got used to it. the cavernous scarred hole i have now that the breast is gone is another level of alarming.

we talked about how it doesn’t matter if your breast was lopsided now. it was a small price to pay. and nobody notices anything, i said. it had been a great relief to learn that i could go out with only one breast, and walk normally without trying to hide it, and people wouldn’t point and stare. people didn’t see it. what a wonderfully freeing realization.

she’s still trying to get used to the change in her life. she was talking about living another 20 years. i said but it doesn’t matter. you’re going to die. it’s what you do with each day that counts. when is irrelevant.

quality of life.

doctors don’t much care about quality of life. they want quantity. they’ll start aggressive cancer threatment (which makes the patient want to die) just weeks before the patient gratefully dies. they shrug when you mention that chemo damages your heart. they shrug when you tell them the radiation dose they’ve just given you. they write prescriptions for narcotics because it doesn’t matter if you’re unconscious, as long as you’re not feeling the pain.

they’re so into pain management that you’d think insensitivity was the highest virtue and pain the worst horror. when in fact pain is a good thing, in many ways. i think they just want you knocked out so you can’t complain to them and distract them from important work.

i’m not at the point of thinking that anything i do is going to heal me of my cancer, or prevent it from every recurring, and return me to that glow-of-youth optimism about my body always staying young and firm, the scornful dismissal of old people as deserving of their fates.

i’m at the point where i’ve already accepted that i’m going to die.

when is irrelevant. it’s death that matters.

your relationship with your own death. the things you left unfinished, the loose ties, the things unsaid. it won’t make much difference if it’s next week or in 20 years. i’ll enjoy every day and make the full use of my energy, and relax and smell the roses, and go tickle my husband where he giggles.

in my old life, i walked around angry, concerned about fucking politics, worried about things that just made me worried and angry. now that i’ve gotten my death sentance, i don’t bother myself with petty everyday bullshit concerns like this current smoke and mirrors game of ‘the sky is falling‘.

as long as there’s a cloud in the sky, i’m going to feel joy. as long as there’s green in the landscape, i’ll feel love. as long as my sweetheart rubs my back at night, i’ll live another day.

or not.

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Responses

  1. Jeanne:

    I love your writing because it is real. I too, do not have time for people who are not real. There just isn’t enough time in a day for me to waste on that.

    I so understand how much the tests take out of you. I have a ct tomorrow and a bone on thursday. It is exhausting.

    I especially love your ending about what we need to do now and that when is irrelevant. I have never looked at it like that before. The part of being irrelevant that is.

    Love Renee

  2. I accepted my death at 11, when everything that I was and had known ceased to exist at the hands of overwhelming and isolating hatred by all of those around me–including my peers, teachers and most adults.

    It wasn’t until the summer of 2004 that I found myself again.

    Since then, I can stop and look at the sky and think, wow, there are stars up there just twinkling along, doing their thing, and I’m just standing here, getting to watch.

    I’m going into the field of music therapy. I’m getting my master’s in it now. You might consider finding one. We’re interested in quality. We treat people as whole people, trying to find what will make their life better–not just their symptoms, but their entire existence.

    You pinged me because of the bad bruise I posted about. I’m linking you because I like to read people who aren’t faking it just for society’s wants and requirements. If you like people like that, then I suggest you investigate the world of the autistic spectrum. There are lots of us who don’t write or exist just to be fake or try to fit in. We couldn’t fit in even if we wanted to.

    I’m an aspie, but I’m also me.

    Like Bruce Wayne said in Batman Beyond: Return of the Joker, “It’s not Batman that makes you worthwhile, it’s the other way around. Never tell yourself anything different.”

  3. Also, on music therapy – http://www.musictherapy.org/faqs.html

  4. I keep adding things . . . I was 11 in 1995.

  5. Jeanne — thinking about you and hoping that you are well.

    Love Renee


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